For the past several years the CJD Foundation has asked family members to complete a questionnaire about their loved one. We are the only repository for this information.

Beginning in September of 2005, family members who have completed the questionnaire will also be asked if the information from it can be shared with the National Prion Disease Pathology Surveillance Center (NPDPSC). They will be compiling statistics which, we hope, will provide useful scientific and demographic information. If you agree, we will ask you to sign a permission form.

If you have previously completed a questionnaire and are willing to allow us to share the information with the NPDPSC, please email us your permission to help@cjdfoundation.org.

Please note that the completion of a questionnaire is completely voluntary.